Hi,
Laurat's posting convinced me that I, too, needed to register and post. I've been reading the forum since my diagnosis with RA in September, I first I just want to say that you all are an amazing group of people! I've learned so much about what it really means to have RA - not just the clinical stuff you read in medical websites.
I'm going through a lot of confusion at this point and maybe some of you can help me (I hope!). My diagnosis came after three episodes over the last year when my hands and feet hurt - not horribly, but enough to make me wonder what was going on. I thought it was carpal tunnel, then OA, then in February I had a four day period where I could do nothing but sleep...and I began looking for answers. Ended up with an RD who was quick to diagnose, put me on Plaquenil and Relafen, then sent me off with the comment that this should go away in 4 to 6 weeks and at that point he'd take me off the drugs.
I think he did this because I have almost no swelling, only pain. RF and other tests were absolutely normal and xrays showed no sign of erosions. Since then I've begun to feel pain and weakness in my knees, wrists, elbows and shoulders. Still no swelling that I can see. None of it is absolutely debilitating, but there are times when a set of stairs seems like Mt. Everest! I'm still working, and luckily have a job that is flexible - I teach at a university training elementary school teachers.
I have so many questions going on in my mind - I guess a lot of you can relate to that! But what I guess I want to know more than anything else is if anyone else started where I am and what's happening now. Sometimes I think maybe I don't have RA, cause I don't swell, I rarely ever just can't do things (thank goodness!), and the pain I have isn't just a stabbing pain in a joint. I get burning pain across my hands, or achy pain that seems like its in the tendons or muscles surrounding the joint. I get so that I just obsess about what hurts, how it might hurt over the course of the day, what I'll feel like tomorrow - its so distracting and kind of depressing.
Okay, I've gone on long enough for my first post. Thank you all for all you've already done for me with this wonderful community.
Eileen
Hi Eileen, Welcome. I am glad you made the decision to post. This is a wonderful place to get help and support and to find answers. I started out just where you did. My lab work was all ok, sed. rate, ana, ra factor, everything. I had very little swelling, no nodules, no joint changes on x-ray, nothing. Fortunately I found a very good Rheumy who said that these are not the only determining factors for ra. I had pain around the joints in the tendons, which is a sign of ra. I had fatigue some days, which is also a sign of ra. I had trouble with depression, trouble sleeping, and days with pain and days without pain. Most ra drs. use more than just blood work to determine ra. There are also lots of other related diseases that present in almost the same way. If the medicine helps, that should be a sign to you. Early detection and proper treatment are vitally important to preventing irreversible joint damage. Please don't give in until you find a dr. and a diagnoses, and please know that you are not alone in your struggles.
jamie
Hey welcome. I don't post too much but I read the boards daily. I decided to posst to you because you sound like just where I was six months ago. I thought I had Lyme disease first but a blood test proved otherwise. My rheumatologist initally put me on Mtx. It made me so incredibly sick that I had to stop it after two weeks. He then started the ball rolling getting me approved for Enbrel w/my insurance company. I've been just "ok" on it. He said he wasn't happy with my progress or lack thereof on the ENbrel and Relafen so now I have been given Arava to take everyday. I have good days and bad. At first I was horribly depressed. I'm tired a lot of the time and he told me I MUST rest, even when I feel great. It's hard but I manage most days. The people on the board have a wealth of information that's yours for the asking. Ask away! Take care.I know what you are going through. I had no swelling in the begining just lots of fatigue and pain. My doctor first put it down to stress. I had one small nodule on my little finger that had been there for years but i ever thought to ask about it. I was in denial when i was first diagnosed as everyone else i spoke to had swollen hot joints and i still had nothing. I had days when i couldnt walk or get out of bed because i was soooooo tired and stiff. The time seemed to roll round quickly though because there they were one day lovely swollen joints. Knees that resemble bowling balls and fingers that look like spindles. RA affects us all in many strange ways, you may not get any swelling at all and find the perfect medication that suits you, some people get a mild form with regards to the swelling.I dont know about others but for me its the fatigue that is the worst .RA Does come to rule your life , as its a life changing disease but its not all doom and gloom, we all get depressed but listen to a lot of people on hear because there is humour and laughter and a lot of understanding. I wish you well
Eileen,
I don’t swell. I do, however, experience extreme pain when I have flares, and my lab results were pretty high. You didn’t mention if your doctor ran an Anti-CCP. It can sometimes have a positive result when the RF doesn’t and is highly specific for RA. After a year on Plaquenil, my rheumatologist decided to cut my dosage in half to see if I was in remission. That was such a big mistake. My pain came back with a vengence. I immediately went back to the normal dosage, but it took a lot of time and a lot of prednisone to get me back on track. What were some of the other tests that you had?
There was a woman on another message board that posted that while she was stationed overseas, she started having joint pain. The doctors on the base didn’t believe anything was wrong with her because she didn’t have swelling or positive RF. They wouldn’t give her anything but anti-inflammatory drugs. When she returned to the states, she had a bone scan and erosions were found in multiple locations. I’m finding nothing is “set in stone” where RA is concerned.
It sounds like your doctor is starting off on the right foot giving you Plaquenil. It’s a disease modifying drug. I’m am curious as to why he would take you off the Plaquenil in 4 to 6 weeks when it can take longer than that for the Plaquenil to have any effect. Are you sure he wasn’t talking about the Relafen?
Cheri
Eileen - You are blessed to have a doc quick to diagnose and get started on some meds. I was told it was all in my head, lol.
Like you 2 yrs ago I had just intermittent pain and no swelling, redness or hotness. Thank goodness I found a great PCP and Rheumy who said it was RA or PA in Sept 05. Both RA and PA are treated about the same with an absence of psoriasis. All of my labs and x-rays have been neg as well.
After 1 1/2 yrs I began having obvious symptoms that are now raging even on 20mg MTX due to a late start in meds. I will be going to a biologic soon. I need a cane and cannot work and am 49 yrs old.
I hope you get all of your questions answered and take care.
I've had the RF test, sed rate, and CCP tests - all negative in August. Since other joints have started to hurt I haven't had any bloodwork done. The RD has called me to check in - didn't want to 'see' me again as he said there's nothing to see (no swelling I guess). I know I should be really glad that he's put me on Plaquenil (and I am!), but I'm also frustrated because he seems to dismiss my other joint pain - when he talks to me he's only interested in the hand pain (which is what hurt most at that time), not the fact that my knees, etc are now bothering me. I'm thinking of making a change in RDs - I am one of the lucky ones and have great insurance (thanks to my hubby!) and can go to Stanford if I choose. Any of you going to a med center like this? Do you think its a good idea?
And thank you all for sharing - it's made me feel a lot less alone!
Eileen
HI Eileen, I started out with swelling and pain. Then came the tireness. Had a postive RA factor and a borderline positive ANA. At first they said that it was lupus and then the first RD said it was RA. I was placed on MTX and within a few wks. I was feeling better. When my insurance dropped my RA, I had to switch docs. Started to see this other one and my blood work was normal but I was still swelling and in increase pain. He took some x-rays and discover that I had false gout which can micked RA. So I was placed on gout medicine and pulled off of the MTX. I still have RA but it's a very mild case so far. However, I do have sever OA, which now rules my life.
RA and other arthritis condidtions can and will make you feel miserable and it's not in your head! Hang in there and with the right doc, proper tests, and the right med. combination, you will start to feel better.
All of us will give you support. We vent and rant to each other, we laugh together and mostly we become a family. You're not alone in this!!!
Hi Eileen, Welcome and I'm glad you're here to ask questions.
In 1987 I was referred to Stanford arthritis center and had labs and exam. All inconclusive, no diagnosis based on normal labs. No swelling in joints, no inflammation, just pain in 1 finger, both ankles, and 1 toe. Pain continued off and on but responded to anti-inflamm. meds. This went on for 12 years.
In 1999 I developed a herniated disk and incredible leg pain and pain in all my joints. My gyn ordered an RA factor and sed rate. RA factor was 900 and sed rate was very high. Besides a blown disc I now had an severe onset of RA, still without swelling or inflammation - only pain. After microdisc surgery I was placed on MXT by an RD. I slowly responded and ended up stopping MXT because I was in denial.
I felt pretty good for 5 years, then the flare from hell hit. It has taken me 2 years to find the right combo of meds. I was homebound for 6 months on Pred. and pain pills only (stupid Dr.) Due to inactivity I developed a pulmonary clot and came close to dying. It was misdiagnosed by the local hospital. I traveled 70 miles to a large, well known facility and they saved my life. After I was discharged from the hospital I found an RD who prescribed Enbrel. I was on Enbrel for 8 months with some improvement. I could now travel and walk. I changed RD's who prescribed Remicade, MXT, and worked with me on pain management. I'm now 75% improved and can travel, walk the beach, make silver jewelry and bead, paint and I just tiled my outdoor kitchen.
I've paid the price for my denial and for inconsistent and bad medical management of my RA. I have erosion and damage in most of my joints. My knees, hands and ankles are the worst. Don't fall for denial and if you don't have one, find an aggressive RD who will listen to you and prescribe medications based on your symptoms and lifestyle, not what the book says. Each and every person who has RA is different.
If I still lived in the Bay area I would go back to Stanford and be followed at the arthritis center. I moved from Burlingame to Nevada and haven't had the best of the best. We've retired and are traveling full time. We live in La Pineta, Mex. for 6 months and the states for the other 6 months. I was lucky and found a young, aggresive RD in Yuma and see him every 6 months. We do a lot of my care by phone and since I'm a nurse I know when I need to see a doc. There's a very good hospital 40 miles from us in Puerta Vallerta that I can go to if need be. If you have a good RD then that's half the battle. Don't allow yourself to wallow in self pity or denial. They will only make the disease worse and years later you will pay the price. Keep your family and your friends close to your heart, because you'll need their support and they will be there for you. I know. My friends and family were a constant source of help and humor, and at times irritation but they stuck around.
I hope you continue to post and ask questions. There is great support here when you need it and much information.
Definitely see another RD, if only for a second opinion. (I'm not suggesting you don't have RA--it sounds very, very much like you do. Like you, I don't have positive blood tests at this point and very little swelling. That's very often the case in early RA, and likely to change down the road for both of us. Oh, and the way you describe the pain: yeah, that's it.)
If I lived where you do, I'd be checking out Stanford.
A doc who is only interested in your hands, and not interested in following you closely and treating you seriously until you have visible damage, is a risky proposition. I'd be finding someone else quickly, if only for comparison's sake.
Check out the book Out of Joint. Get it at amazon or some other online place. It's by a college professor in your area, a woman who has had RA for many years, since before there were good drugs for it. I found it a wonderfully honest, insightful book about a life journey with this disease. It's not meant to be a patient guide to the disease--there are better books for learning about RA. It doesn't give advice and it doesn't attempt to be sweetness and light. But I've found it so helpful to read this woman's story. As different as her situation is from mine, I drew strength and understanding from it.
Good luck.
Hi Eileen and welcome to the board!
You have gotten some great advice! I would just be repeating what the others have said so I just wanted to to welcome you here.
Look forward to hearing more from you!